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Now in my bones

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User
Posted 01 Nov 2023 at 16:08

I got the results of a recent bone scan this morning and my urologist told me my cancer is now in my bones. I have to restart Zoladex on 20th November and have been prescribed Bicalutamide tablets for the next 4 weeks and I am being referred back to an oncologist. Prognosis is 5 to 6 years so, obviously, i'm a bit worried now that I have been given a 'Sell By' date. I have a lot of questions, some of which I should have asked the urologist, however, my head was in a bit of a state. I am guessing my T3 is now T4 but don't know how that works. My main concern is how things will develop further down the road and what I can expect to experience in terms of symptoms etc. Anyone any ideas? The urologist said there are new treatments available since I was diagnosed 6 years or so ago but I don't know what they might be. I would not want chemo as I saw what it did to a friend of mine and, anyway, I'm nearly 73 and would rather have a life without sickness if possible. Any replies will be welcome.

Thanks

User
Posted 01 Nov 2023 at 16:59

New treatments include apalutamide, enzalutamide, or darolutamide.  I'm on apalutamide and have avoided chemo and radio so far (20 months).  I've been able to keep life going without getting ill, but these drugs all come with side effects.  My main issues are hot flushes and tiredness. Plus if having a libedo is important to you, you might want to avoid these hormone blocking treatments!

Good luck and remember you don't have to accept the standard protocols!

User
Posted 01 Nov 2023 at 17:00
Hi Mitch I’m 56 and have been ‘incurable’ since my surgery 8 yrs ago. I opted for QOL also and deferred treatments as long as possible. Bone spread was found 3 yrs ago and I’ve been on HT for that length of time with very minimal problems. The results have just started to turn though so I’m praying it lasts a while longer. Good luck
User
Posted 02 Nov 2023 at 09:32

Hi mitch

Looks like we're all in the same boat bud all we can do is bounce off each other and support each other the best way we can 👍,but don't bounce off each other to hard cause me bones might break 😉.

Regards Phil 

User
Posted 01 Nov 2023 at 16:08

I got the results of a recent bone scan this morning and my urologist told me my cancer is now in my bones. I have to restart Zoladex on 20th November and have been prescribed Bicalutamide tablets for the next 4 weeks and I am being referred back to an oncologist. Prognosis is 5 to 6 years so, obviously, i'm a bit worried now that I have been given a 'Sell By' date. I have a lot of questions, some of which I should have asked the urologist, however, my head was in a bit of a state. I am guessing my T3 is now T4 but don't know how that works. My main concern is how things will develop further down the road and what I can expect to experience in terms of symptoms etc. Anyone any ideas? The urologist said there are new treatments available since I was diagnosed 6 years or so ago but I don't know what they might be. I would not want chemo as I saw what it did to a friend of mine and, anyway, I'm nearly 73 and would rather have a life without sickness if possible. Any replies will be welcome.

Thanks

User
Posted 02 Nov 2023 at 05:35

Hi Mitch,

I think I am just behind you: I have my big scan on Saturday. I  am T3 (in the seminal tract but no further). T4 means it has gone further. I expect to be T4 soon. Yes, bones is what it goes to. Your questions are the same that I will be asking soon. I am 78. I don't like to think about 78+5. To **** soon. You have my deepest sympathy and maybe we swap notes if I get similar bad news this month. Certainly I will want to find out what drug fests other have been invited too.

Cheers,

Otto

User
Posted 02 Nov 2023 at 14:54
Hi Mitch, I was caught four years ago with prostate that had spread to the bones, stage T3b we asked for a prognosis and was given 40% chance of surviving 4 years, that's up now and I am still okay tired but still not taking any pain killers just having to do things slower. Only thing I would say is keep as fit as you can for as long as possible (I know it's easy to say)

I've been on Enzalutamide since February 21, Keep safe

PS if you go for travel insurance just say incurable cancer not your best before date as it makes a big difference to insurers, Take care DaveH

User
Posted 04 Nov 2023 at 15:47

Hi Dave,

 

Hi Dave, thanks for the tip about travel insurance!

I'm not planning on going abroad any time soon as my wife and I let our passports expire during the Covid malarkey and I haven't got round to renewing them yet. I appreciate your observations about the side effects of the drug you're taking and will be asking some pertinent questions when I get an appointment with the oncologist. I am going for a Zoladex implant on 20th November. I was on that for 18 months before but my urologist cut short the treatment as I had a heart condition (although that preceeded the cancer by a few years). Weight gain and 'moob' increase were the main side effects so I'm not concerned about restarting that particular treatment.

Cheers

Mitch

User
Posted 08 Jan 2024 at 11:10

Originally Posted by: Online Community Member

Bit of a delay in replying as I was waiting to see the oncologist for an initial appointment yesterday (11/12/23). I asked to look at the bone scan I had last September and it was worse than I expected, showing dots of cancer all over the place from hips to ribs to shoulders plus one at the base of my spine. After some discussion I have agreed to start Apalutamide, in conjunction with the Zoladex I am on already. This should be sorted in the next week or so. Could you let me know any side effects you have experienced and any other details that might be helpful to me?

 

Hi Mitch, joining in this thread.  I'm 59 and was diagnosed stage 4 back in 2019 with multiple metastases in my pelvis, spine, ribs and shoulder blade.  I've been on Zoladex since diagnosis in Jan 2019, and had 6 rounds of chemo (Docetaxel) in 2019, and 16 sessions of radiotherapy targeting the primary tumour. 

This proved very effective for 2 years, needing no further intervention until my PSA started rising again in 2021.  At this point I started Enzalutamide (not the same as you're taking, but similar) which proved effective at keeping PSA under control for another 2 years. 

At the start of 2023 I started was experiencing sciatic pain, it turned out that the enza had shrunk all the metastases dramatically apart from one persistent little swine on my lumbar spine (for which I had targeted radiotherapy).

I have never had any side-effects from the enzalutamide, no fatigue, 'brain fog' or gastric issues, but it will vary from person to person.  I hope the apalutamide works for you, best of luck.

Craig

User
Posted 02 Feb 2024 at 16:39
Hi, I had a bone scan yesterday (1/2/24) and oncology consultation today (2/2/24). Not only had my PSA gone up to 82 in spite of enzalutamide and prostap, but when he showed me the bone scan pictures it was genuinely horrific. I am riddled with it, especially my skull and spine. He's taken me off enzalutamide immediately as it wasn't doing any good, and is referring me for Radium injections.

Gutted because I can't play golf or walking football anymore for risk of stressing/knocking any part of my skeleton.

User
Posted 02 Feb 2024 at 18:00

Hi Stew,

Really sorry to hear about this and that you’ll not be able to participate in the things that bring you some happiness. Hopefully you can find something else to occupy yourself that also makes you smile. I’m sure you have lots of support from family and friends but one of the things we were talking about at Maggies today is how many of us find it easier to talk to others in the same boat, because they get it. The meeting was fascinating  with lots of different discussions (and laughs as well) but we all come away feeling better than we went in.

I wish you all the best,

Derek

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User
Posted 01 Nov 2023 at 16:59

New treatments include apalutamide, enzalutamide, or darolutamide.  I'm on apalutamide and have avoided chemo and radio so far (20 months).  I've been able to keep life going without getting ill, but these drugs all come with side effects.  My main issues are hot flushes and tiredness. Plus if having a libedo is important to you, you might want to avoid these hormone blocking treatments!

Good luck and remember you don't have to accept the standard protocols!

User
Posted 01 Nov 2023 at 17:00
Hi Mitch I’m 56 and have been ‘incurable’ since my surgery 8 yrs ago. I opted for QOL also and deferred treatments as long as possible. Bone spread was found 3 yrs ago and I’ve been on HT for that length of time with very minimal problems. The results have just started to turn though so I’m praying it lasts a while longer. Good luck
User
Posted 02 Nov 2023 at 05:35

Hi Mitch,

I think I am just behind you: I have my big scan on Saturday. I  am T3 (in the seminal tract but no further). T4 means it has gone further. I expect to be T4 soon. Yes, bones is what it goes to. Your questions are the same that I will be asking soon. I am 78. I don't like to think about 78+5. To **** soon. You have my deepest sympathy and maybe we swap notes if I get similar bad news this month. Certainly I will want to find out what drug fests other have been invited too.

Cheers,

Otto

User
Posted 02 Nov 2023 at 09:32

Hi mitch

Looks like we're all in the same boat bud all we can do is bounce off each other and support each other the best way we can 👍,but don't bounce off each other to hard cause me bones might break 😉.

Regards Phil 

User
Posted 02 Nov 2023 at 14:54
Hi Mitch, I was caught four years ago with prostate that had spread to the bones, stage T3b we asked for a prognosis and was given 40% chance of surviving 4 years, that's up now and I am still okay tired but still not taking any pain killers just having to do things slower. Only thing I would say is keep as fit as you can for as long as possible (I know it's easy to say)

I've been on Enzalutamide since February 21, Keep safe

PS if you go for travel insurance just say incurable cancer not your best before date as it makes a big difference to insurers, Take care DaveH

User
Posted 04 Nov 2023 at 15:47

Hi Dave,

 

Hi Dave, thanks for the tip about travel insurance!

I'm not planning on going abroad any time soon as my wife and I let our passports expire during the Covid malarkey and I haven't got round to renewing them yet. I appreciate your observations about the side effects of the drug you're taking and will be asking some pertinent questions when I get an appointment with the oncologist. I am going for a Zoladex implant on 20th November. I was on that for 18 months before but my urologist cut short the treatment as I had a heart condition (although that preceeded the cancer by a few years). Weight gain and 'moob' increase were the main side effects so I'm not concerned about restarting that particular treatment.

Cheers

Mitch

User
Posted 08 Nov 2023 at 10:34

Hi Mitch, I was diagnosed in June 2019 with advanced PC which had spread to my hip and the base of my spine, but thankfully not to my lymph nodes or other organs. Did 6 bouts of chemo and am now on Zoladex and have just swapped from bicalutamide to arbiraterone. I have an appointment tomorrow with oncology to see how the arbiraterone is doing.

I'm feeling pretty good all things considered. Suffering from more tiredness than I would like, but we all seem to be suffering from that. I was told 5 years at diagnosis, but I've met people in real life and on line who have had similar prognoses and have lasted and are still lasting well beyond this. Mild side effects from arbiraterone (hot sweats, wonky bowel movements) which seem to be sorting themselves out after 5 weeks.

Keep positive. Have things to look forward to (Bruce Springsteen next May!!!!!!!! Golden Wedding in August .). Make the most of each day but if you feel knackered have a sit down and a kip. 

Try Insurance With for travel insurance. They were brilliant with me last year and hopefully renewing in the next week or so.

Keep well, Peter

User
Posted 08 Nov 2023 at 16:24
Hi Peter and thanks for your message, it's greatly appreciated.

You seem to be made of pretty strong stuff - 6 rounds of chemo doesn't sound like much fun. I haven't received an appointment with the oncologist yet but will be asking them about the side effects of any meds they suggest as I obviously want to limit discomfort. I remain fairly positive but my wife and I don't have many distractions - kids long gone and miles away and few friends locally so social life is uneventful. I do read a lot and like a wide range of music although my ancient cd player is on the Fritz and needs to be replaced. Always liked 'The Boss' so can understand your anticipation for next May.

Good luck,

Mitch

User
Posted 08 Nov 2023 at 17:03

Best of luck on the Zoladex Mitch. Rooting for it to work for you, and for many years. 

I started in Jan 2018 on Prostap with RT plus Brachy which appeared to work but eventually recurrence in lymph nodes and then somewhere else (I don’t want to know where) meant I am finally on Zoladex plus Abiraterone which is working albeit rather slowly. I haven’t asked for a prognosis as I really don’t want to know. Can’t understand anyone wanting to know…😬

There are lots of men on here that have found Prostap or Zoladex works for them for many years. No reason to suppose it won’t work for you.

I  wasn’t on Zoladex on its own for long but found side effects similar to Prostap. Libido was a big issue for me mentally and I did suffer enough to need counselling which I’m still having. (Childhood stuff to deal with as well). 
Physically I didn’t really have any major problems. Doing cardio and weights appears to help stop the muscle wastage. I did a Tough Mudder while on Prostap and there’s loads of guys on here who have done some really incredible things whilst on HT. 

I did start to get the fatigue when I started on Abi with Zoladex but that could be the Abi, and it’s stopped now. 

So really I wouldn’t worry about side effects too much on Zoladex , they are manageable, although if you’ve not experienced the loss of libido before that may need some work. 

Wishing you best of luck 👍

Phil

User
Posted 13 Nov 2023 at 19:18

Did anyone experience difficulty sleeping when on Apalutamide. I suffered from Restless Leg Syndrome. It was surprisingly severe and after a week of no sleep I had to discontinue my meds. I will start again tomorrow. 

I do take other medication daily for chronic spine pain and anxiety so there may have been some interaction, I guess!?.

Best of luck to you all and thanks for the community support👍😉

 

User
Posted 12 Dec 2023 at 15:15

Hi Forestjohn,

Bit of a delay in replying as I was waiting to see the oncologist for an initial appointment yesterday (11/12/23). I asked to look at the bone scan I had last September and it was worse than I expected, showing dots of cancer all over the place from hips to ribs to shoulders plus one at the base of my spine. After some discussion I have agreed to start Apalutamide, in conjunction with the Zoladex I am on already. This should be sorted in the next week or so. Could you let me know any side effects you have experienced and any other details that might be helpful to me?

 

Thanks, and kind regards,

 

Mitch 35 (aka Steve)

User
Posted 08 Jan 2024 at 11:10

Originally Posted by: Online Community Member

Bit of a delay in replying as I was waiting to see the oncologist for an initial appointment yesterday (11/12/23). I asked to look at the bone scan I had last September and it was worse than I expected, showing dots of cancer all over the place from hips to ribs to shoulders plus one at the base of my spine. After some discussion I have agreed to start Apalutamide, in conjunction with the Zoladex I am on already. This should be sorted in the next week or so. Could you let me know any side effects you have experienced and any other details that might be helpful to me?

 

Hi Mitch, joining in this thread.  I'm 59 and was diagnosed stage 4 back in 2019 with multiple metastases in my pelvis, spine, ribs and shoulder blade.  I've been on Zoladex since diagnosis in Jan 2019, and had 6 rounds of chemo (Docetaxel) in 2019, and 16 sessions of radiotherapy targeting the primary tumour. 

This proved very effective for 2 years, needing no further intervention until my PSA started rising again in 2021.  At this point I started Enzalutamide (not the same as you're taking, but similar) which proved effective at keeping PSA under control for another 2 years. 

At the start of 2023 I started was experiencing sciatic pain, it turned out that the enza had shrunk all the metastases dramatically apart from one persistent little swine on my lumbar spine (for which I had targeted radiotherapy).

I have never had any side-effects from the enzalutamide, no fatigue, 'brain fog' or gastric issues, but it will vary from person to person.  I hope the apalutamide works for you, best of luck.

Craig

User
Posted 02 Feb 2024 at 16:39
Hi, I had a bone scan yesterday (1/2/24) and oncology consultation today (2/2/24). Not only had my PSA gone up to 82 in spite of enzalutamide and prostap, but when he showed me the bone scan pictures it was genuinely horrific. I am riddled with it, especially my skull and spine. He's taken me off enzalutamide immediately as it wasn't doing any good, and is referring me for Radium injections.

Gutted because I can't play golf or walking football anymore for risk of stressing/knocking any part of my skeleton.

User
Posted 02 Feb 2024 at 18:00

Hi Stew,

Really sorry to hear about this and that you’ll not be able to participate in the things that bring you some happiness. Hopefully you can find something else to occupy yourself that also makes you smile. I’m sure you have lots of support from family and friends but one of the things we were talking about at Maggies today is how many of us find it easier to talk to others in the same boat, because they get it. The meeting was fascinating  with lots of different discussions (and laughs as well) but we all come away feeling better than we went in.

I wish you all the best,

Derek

User
Posted 02 Feb 2024 at 18:13

Hi Stew, I re-iterate Dereks comments. I might even have a look at a Maggies around here myself … 🤔

Take care 

Phil

User
Posted 02 Feb 2024 at 23:16

Hi Mitch

Side effects of apalutamide for me have mainly been: regular day and night hot flushes, tiredness and complete loss of any libedo.

The box of pills mentions skin issues, but I've been fine, other than losing a lot of body hair! (However, more growing on my head, so a positive there!) It also mentions seizures occasionally for those susceptible - my response to this has been 40 to 50km on a row erg each week, to keep the blood pounding around my body.  I think it can also affect your thyroid - the oncologist certainly keeps checking my bloods for this. However, after more than 18 months this hasn't been an issue for me.

Good luck with the apalutamide!

User
Posted 03 Feb 2024 at 08:21

Originally Posted by: Online Community Member

Hi Stew, I re-iterate Dereks comments. I might even have a look at a Maggies around here myself … 🤔

Take care 

Phil

I know I am always banging on about Maggies but it has made such a difference to me. I also know not all Maggies Groups are as good as mine here in Fife, but it has been a source of immense support, information, friendships …and laughter. If you can find one locally give it a try.

Derek

 
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